Tag Archives: cancer

Many days, often many weeks, go by and no one touches me. Not a handshake. Not a friendly pat on the arm, not a hug nor a kiss. Alone.

Yesterday, Dr. Siddiqui asked for a second time, “You live alone?” surprised as I get off the table on which he removed the tumor and onto my scooter. The nurse holds my arm, afraid I will fall even though I transfer well from table to scooter, from here to there, able to stand and move but not walk.

I like living alone. Generally. Of course, I would like…

Yesterday’s doctor visit is the first time I have been touched in a while—the nurse taking my blood pressure, the surgeon cutting into my belly.

I think of my neighbors here in the old age home where I live. Few receive a human touch as often as I which brings me to wondering how many of the elderly and disabled go to health care appointments primarily (albeit unconsciously) because they crave any human touch.

In my last posting, I boast Don-Juan-like of my love of women as if this is the only reason why I want to be remembered, not for causes of which I am proud nor work I have done nor my parenting two beautiful daughters in their 20s, nor the good men and women who have been my friends.

The experience of intimacy seems to have made all this; namely, my life possible, achievable, hopeful [pick a word that conveys rapture].

I do not want to examine this subject more closely except to note again that I am waiting in 6 days’ time (give or take) for a pathologist to make an Old Testament-style judgment—who shall live and who shall die.

The dictionary defines pathologist as “one who interprets and diagnoses the changes caused by disease in tissues and body fluids.”

In the past, I have had male and female pathologists whose signatures have appeared on my cancer diagnoses. “It is unheard of to see your pathologist,” a North Carolina physician I greatly trust advised me. I think of this specialist as Merlin, wearing a peaked hat in a spider-filled room next to the experimental rat cages peering into a microscope, considering….

For some forms of cancer, such as Hodgkin’s disease, the job requires years of experience differentiating among one cell form and another.

My first cancer around, the exacting oncologist explained that he sent my slides to the National Cancer Institute for review by “world specialists” because sometimes pathologists do not recognize the cancer when they see it because….

[I published a book on my first cancer, available for sale on this site, which not only will explain this but will put $10 in my pocket. The book highly recommends sex as helpful cancer therapy.]

This is the time of waiting when I am instructed to think “pretty thoughts.”

Pretty thoughts do not come easily to me when I am waiting right now. Nothing helps but to write. Prudence dictates I put these impulsive musings in a metaphorical drawer until I have had time to allow reasonable judgment to prevail.

It may not be prudent for me to publish impulsively as I have been doing. Nor would I recommend others to model themselves on my impulsivity. Instead, I rationalize doing so because writing now and pushing PUBLISH makes me feel better than any of the other palliatives recommended and readily available: meditation, prayer, exercise, and breathing.

On the subject of loving women, I recall a trip to China nearly 30 years ago where I was the spouse accompanying my pregnant wife who was negotiating a textile agreement.

While Diana negotiated, I was taken on a tour of a Buddhist temple. The guide asked whether I wanted to go to the shrine where people pray for their unborn children to be boys. I asked to pray at the shrine for a girl—which does not exist, but unhinged my guide’s poise.

Fortunately, both my children are female. I was raised by a single mother who in turn was raised by a single mother. Yes, I do have male friends.

For the most part, I prefer the company of women; I know the distinction between love which is not erotic and love which is and am comfortable with the appropriate boundary lines.

I love women.

++++

Yes, I recognize that the issue of whether I live or die does not rest solely with the pathologist. There is the oncologist. There is a Higher Power. There is good luck.

Note: I am in no way repudiating Casanova. There is much to admire in his multi-volume diaries. There is Mozart’s opera on the master. Mozart too is a good guy.

Share this:

It is 2:33 in the morning. I have an appointment today to see a surgeon to decide whether to operate—specifically to perform a minor procedure; namely, remove a small tumor from my belly.

As with the three biopsies I have had in the past, consulting a surgeon on whether to operate is a formality. Dr. Jennifer Simmons, who referred me to the surgeon, recommended I have the procedure as an overnight stay at Mt. Nittany Medical Center. I will lobby for outpatient surgery without spending the night in a hospital because I do not like hospitals.

Many of the hospital personnel at Mt. Nittany have become friends. Still I would prefer to reacquaint our friendship elsewhere. I have been a patient at Mt. Nittany three times in the past two years, many times in the previous ten years I have been living in State College.

A reasonable guess is the biopsy will happen next week.

Two of my past three tumors have been malignant despite overwhelming odds they would be benign. After a lifetime in which I have survived cancer on three separate occasions, I have learned to automatically evaluate my life chances by evaluating the odds.

This time I suspect the odds will not be with me on two fronts. First, I suspect the tumor will be malignant. Second, I suspect my chances of survival will not be good. I could be wrong. [James Branch Cabell wrote: “The optimist believes we live in the best of all possible worlds. The pessimist fears it is true.”]

I could explain the rationale for my gloomy prognostications, but it would be too complicated and would depress me.

Rather, as a layman who has researched cancer since my first cancer diagnosis at age 28, I will proceed one step at a time with the knowledge that what I do not know about the subject of cancer is considerable.

Two months ago, after I presented the tumor to my physician (presented being a word commonly used on medical charts) I took State College’s para-transit bus to Geissinger Medical Center for a CAT scan. I had canceled two previously scheduled scans because I had work to do which I regarded as more important.

My experience with medicine is that once I go to a doctor, I am trapped in a world where there is always one more test to do followed by the reality of considerable unpleasantness such as kidney surgery last year and radiation therapy several years previous.

I completed a chapter in a report on how to renovate a house so it is wheel chair accessible and an article suggesting that with over 90 percent of U.S. homes not being wheel chair accessible and with Baby Boomers already retiring at the rate of 10,000 a day for the next 20 years that the time has come to build new cities in America.

Meanwhile, my tumor, though still small, has increased in size and its texture has changed. After one canceled appointment with the surgeon, the time has come to see him today.

Share this:

New York, New York, Saturday, April 13, 2013: My third cancer is new. It did not present itself as a suspicious sign the way the lump (tumor) did under my right arm leading to a diagnosis of Hodgkin’s disease followed by major surgery and two rounds of radiation treatment when I was 28 years old. I am now 65.

My first cancer

The radiation did not prevent me from fathering a daughter Joanna (who graduates from nursing school next month and marries in October).

My second cancer

Then, 13 years later, an unpleasant surprise. A lump (tumor) appeared in my groin. My orthodox Jewish oncologist said, “It is a sheylah [a Talmudic term meaning a question which does not have an answer] whether this is a new case of Hodgkin’s disease or the return of the old one.”

Now, with the arrival of my third cancer, Joanna expresses a familiar refrain over the phone from North Carolina, “Everyone knows nothing can kill you, Dad.” Then, she says, “Learning to live again and again and again.”

Amelia (whom I fathered after my cancer at age 42), who is teaching English in rural Spain, continues the theme calling on Skype (revealing her hair is growing long): “And again and again.”

As directed, finding an expert on Cancer III

So, here I am in New York City, a week and a day after I was diagnosed with renal cancer. My urologist had opened her laptop with the CAT-scan showing a very large tumor surrounding my right kidney.

The vividness of the image is startling—large tumor, large large tumor.

Will it kill me?

Can I avoid death?

The answer appears with an insistence:

I am told that I must find a surgeon better than any surgeon in town [i.e. State College]—the kind of skilled surgeon available at Pittsburgh or Philadelphia, only Pennsylvania has a limited number of surgeons of that caliber and finding one able to operate in April is unlikely.

I must go out of state—have an operation in 30 days or else the cancer from the large tumor wilI spread and kill me.

Run don’t walk to the best surgeon who can operate.

That’s the advice I follow.

Diagnosis on Friday at 4 pm.

I am on the phone on Monday to Memorial Sloan Kettering Cancer Center.

It is worth pointing out—before getting to what the Kidney Warlord said—that getting from State College, PA to New York City is not easy for me. I cannot walk. The cumulative radiation from Cancers I and II burned a hole in my spine making me a paraplegic.

I can stand but I have to hold onto something. I get around on a scooter—a power operated vehicle (POV) scooter invented by Al Thieme (CEO of Amigo Mobility) to help his wife who had multiple sclerosis.

The scooter I used for the trip is a lightweight travel scooter which means that it folds apart easily, has remarkable power—climbing easily Manhattan’s hills and steep (sometimes very steep with deep cracks in the payment) curb cuts– is relatively light weight and is narrow (the place at which I slept last night had narrow hallways).

My friend PH came by my State College apartment shortly before 9 AM Thursday to take me to the bus. Megabus runs a double-decker (reminiscent of the buses I used to ride as a child down Fifth Avenue). One problem with being disabled and riding Megabus is that to secure officially sanctioned accommodations one has to call the special disability number which in my experience takes as long as an hour for a simple bus ride plus the information does not reach the bus driver and on and on.

This time I decided to follow the rules that if I am willing to store my wheelchair (or other vehicle) in the luggage compartment of the bus, then I do not have to call the Disability Office.

I brief PH on what to tell the driver (who fortunately does not freak out as others have done). He removes the lift from the closet next to the bathroom, hooks it on the bus floor (so it does not slip when a scooter or wheelchair goes up or down).

I drive up the lift, move from scooter to chair, and PH, who knows how to take the scooter apart does so after leaving me on the bus chair and going down the lift to the luggage area. PH explains how Frank will have to put the scooter together when we arrive in New York.

This detail should make it clear (repetition is bad writing but good pedagogy) that traveling is not easy for me. The desire to save my life (as I saw it) overcame obstacles including the reality that I could not walk to the bus’ bathroom and had to tax my bladder to the limit. Enough said.

Background on Kidney Warlord consultation

So, there we are at Memorial Sloan Kettering Cancer Center (MSKCC) having arrived through a cold rain early for a 10 AM appointment. Since its founding in 1884 as a New York hospital devoted to treating cancer patients, MSKCC has established itself as a world-famous research and treatment center benefiting from the funding cycle created by President Richard Nixon and Congress. Nixon (of whom I cannot resist making disparaging remarks)–in what the White House press office described as “a Christmas gift to the nation”– began the War on Cancer by signing the National Cancer Act in December of 1971. [Expect a return to this subject.]

I keep mentioning Sloan Kettering (as if it were a mantra) because it is regarded as one of the most distinguished cancer centers in the world (which also means it has its critics [and I have the opportunity to repeat myself again]). The surgeon I was scheduled to see is a hot-shot by any standards and (sadly) I have experience with cancer hot shots (remind me to tell you about the time…).

Paul Russo is on the staff of Cornell’s College of Medicine as well as Sloan Kettering and is widely published—see PubMed [an online index of biomedical articles maintained by the U.S. National Library of Medicine and the National Institutes of Health] for a full listing of his journal articles. One article is entitled, “The Role of Surgery in the Management of Early-Stage Renal Cancer.”

The first sentence reads: “There were an estimated 58,240 new cases and 13,040 deaths from kidney cancer in the United States in 2010.”

Here is how Dr. Russo describes his work: “I am a urologic oncological surgeon known for my academic work in kidney tumor surgery. My expertise includes partial nephrectomy, removing only the tumor using small ‘miniflank’ incisions while preserving maximal kidney function, and cytoreductive radical nephrectomy for patients with advanced kidney cancers. I also lead a kidney tumor surgical research team at Memorial Sloan-Kettering that has created nomograms predicting survival and renal functional outcomes.”

Dr. Russo’s office suggested that I invite someone to the appointment which is an excellent idea because there were moments when I did not really hear what the doctor said. My friend Kathy graciously agreed to attend and Dr. Russo spent a surprising amount of time talking to her, which made sense because I was annoyed by how the appointment began.

“Are you irritated at me?” he eventually asked. “Yes,” I answered.

This is what I want: I want you to operate on me immediately, confirm that losing a kidney does not matter, that recovery from the operation (as I have been led to believe) is minor, and a swift operation will cure me of renal cancer by eliminating the tumor before the cancer has a chance to spread.

Dr. Russo said that I may not be suitable candidate for surgery—especially since the surgery he would perform is MAJOR surgery. I may not be suitable because I had a heart attack and have a pacemaker and am a diabetic.

Dr. Russo said that there is increased evidence that individuals such as myself who have multiple health problems do not follow the preconceived view that one kidney is enough. Losing a kidney might cause me significant problems.

Dr. Russo said that he orders his patients to walk a mile on the first day of surgery and two miles on the second. Since I am a paraplegic, I cannot walk at all. Not being able to walk could lead to significant complications.

Dr. Russo said that there is no rush. The tumor surrounding my right kidney is very large and could have been growing for 20 years. It is a good sign that the tumor was found by chance rather than as a consequence of symptoms. Perhaps, the tumor will continue to grow slowly and without causing cancerous damage. The thing to do is proceed slowly, and cautiously.

On Monday morning [remember, today is Saturday], Dr. Russo scheduled me for cardiac tests. In a month I return to New York to see him.

My reaction

I have been staring off in the distance looking at nothing thinking no thoughts. This was true a week ago when I was diagnosed with renal cancer and urged to rush to cut it out and it is true today after being told to proceed slowly and perhaps not have the operation at all.

The advice to rush and cut out the cancer immediately was comforting in its way. Once again I would be doing something to save my life. Doing something is better, in my book, than doing nothing—than waiting and seeing.

As it turns out, I believe Dr. Russo. He has performed more kidney operations than are performed by most countries. He is rewarded by the hospital when he performs an operation—discouraging operations is not good for business or reputation (at least, in the conventional sense).

Dr. Russo has convinced me to rewrite my figurative book and acknowledge that doing nothing may be better than doing something. As I type this, I have difficulty believing what I am writing in large part because I really do not see myself as a 65 year-old man with health problems. I see myself on many days as 16 and on most good days as capable of doing anything. Anything.

I am not 28 anymore as when I was treated for Cancer I. The decisions I make for the future ought to be made carefully because a well-lived life (the kind of life I want to live) causes joy and adds to the productivity of the gross domestic product. [This ongoing story will continue.]

The provinces of his body revolted,/ The squares of his mind were empty, / Silence invaded the suburbs, / The current of his feeling failed: he became his admirers. -W.H. Auden

April, 2013

“Who did you used to be?” a technician asked me while drawing my blood at the Mount Nittany Medical Center, State College, PA.

Before calling 911, I had been practicing before my home mirror trying not to be the usual pain in the ass I repeatedly became whenever I was admitted to a hospital. I had resolved to be gracious no matter what and yet my answer to the technician’s question was swift and angry’ “I am not dead yet.” As it turns out yet is the operative word.

Since Wednesday, I have been looking out the window of my hospital room at the 100,000 seat Beaver Stadium where Penn State plays football at home–musing cosmic thoughts between tests.

By Friday afternoon (yesterday), I had racked up one echocardiogram, two CT scans, a chemical stress test, swallowed a camera while under sedation, and drank a lot of barium. Whatever I was expecting, it was not the arrival of Jeniffer Simon, M.D., urologist at 4. PM with the news that I have renal cancer and unless I take timely action, I will be dead in 10 years.

So, how should I begin?

What do you need to know before you know what I am thinking now, what I am preparing to do next and what frightens me the most?–

The organic route to telling this story follows the following malleable outline:

Solkoff is diagnosed as having Hodgkin’s disease, a type of cancer. He fears the disease and the possibility of death.

He undergoes radiation treatment to eradicate the cancer, “Radiation treatment was the worst experience of my life”: he loses his appetite and his energy, and he becomes depressed. He feels humiliation, anger, and misery.

Written with honesty and feeling, Learning To Live Again is a story of remarkable courage in the face of disease.

Preparing for the next column–a columnist kvetches 1.Submitted by jsolkoff on Sat, 2009-12-26

Dear Reader

I write a column for Voices which appears in the Community and Lifestyles section. The column “From Where I Sit” is about the disabled and elderly. [Please note that according to the Publication Manual of the American Psychological Association (frequently referred to by academics reverently as “the APA style manual”) terms such as “the disabled and elderly” and “the blind” are incorrect; if you want to be published in an academic journal that uses the APA manual, your article will be rejected because, for example, “the blind” assumes that the individual defines himself as blind as opposed to using the politically required phrase “individual who is blind” or better yet “individual who happens to be blind” so that one does not identify individuals by their disability; this is a distinction that does violence to the English language, a language for which I have a lot of loyalty; but a discussion of the language of the disability community must await another time and requires some care).]

For the current issue of Voices (now available at Webster’s and the Corner Room and so on), I describe a telephone interview with John Wayne (conducted before he died) in which he describes his cancer experience. [Expressions such as “cancer experience” should be forbidden by law.]. He counseled people to follow his example. Two weeks after surgery, he was back on the set making a movie and telling people not be weak and feel sorry for themselves.

My original plan was to segue to the next [February] column on tools people who cannot see, walk, or hear require in order to work; dividing the column into three sequential columns and making the next one assistive technology for the blind.

A genius in Boston named Raymond Kurzweil http://en.wikipedia.org/wiki/Raymond_Kurzweilintroduced in June 2005 the “Kurzweil National Federation of the Blind Reader”, which Wikipedia describes as “a pocket-sized device consisting of a digital camera and computer unit. Like the Kurzweil Reading Machine of almost 30 years before, the K-NFB reader is designed to aid blind people by reading text aloud.”

The K-NFB reader gives a blind person at the grocery store the ability to pick up a box of cereal, click the scanner, the device reads the ingredients out loud [available in 13 languages, a concept I find outrageous; imagine hearing words “modified corn starch” in Portuguese; I would find it hard to leave the grocery store, justifying my behavior as saving money on Berlitz—and the Romanian word for avocado is…].

I am eager to describe in detail the voice simulation and generation technology that made it possible for my friend Suzanne Erb, chair of the Philadelphia Mayor’s task force on disabilities, to help me communicate helpful information to the Centre County Obama campaign headquarters, housed in the former Verizon offices across the street from Schlow Library, a headquarters where I convinced the staff to cause new concrete to be poured for the disability entrance so I could take my power chair from my apartment to headquarters.

Erb, who is blind, is also an expert on voting, especially voting machines, contributing regularly to a complicated, detail-filled blog on the subject. Suzanne explained to me the machines the Centre County Board of elections uses and the problems associated with the expensive disability machines (not designed by people with disabilities). [People with disabilities who must use equipment must use equipment without having input in its design.]

President Obama—the candidate for whom I voted in the primary and general election and worked to elect)–is in the process of taking away from those of us with disabilities access to the kind of assistive technology that we used to help get him elected.

Yesterday, I received an email from the President (the same email sent to all Obama supporters on his extensive e-mail list) expressing pleasure at the passage of the health care reform bill by the Senate. Now the House and Senate bills need to be reconciled. I mention this with a sense of urgency because my column must meet a deadline of January 15.

My column is limited to 800 words [fewer words than in this blog posting] which limits me to the expression of only one idea and its exposition. So the question nags: Which new to you idea do I want to write about for the FEBRUARY issue? As a columnist I am obliged to see in the future. Yes, I know that the New Year’s resolutions you have not yet made you WILL break before February.

A predictor of Congressional events told me that reconciliation will take about 3 weeks. But if it takes 6 weeks, then maybe it is time for me to address the effect on Medicare cuts—which the Administration has inserted as an essential element to health care reform—on the ability of low income people with disabilities to obtain power chairs so, for example, I can go from my bed to the kitchen and make my own breakfast or to Webster’s to have Seth make me breakfast. Or, as the cuts continue, I fear being forced by my disability to go to an assisted living place instead, where the cost to Medicare would be $60,000 a year when the cost of my rent is less than $20,000 a year. If I am forced to go to assistive living it will rob me of my ability to take care of myself and it would bum me out considerably.

I will keep you up to date I my quest for the right 800 words for the right time.

John Wayne once granted me a telephoneinterview on his experiences with cancer.For those readers too young to remember [aconcept that defies imagination], JohnWayne (nicknamed The Duke) was anAcademy-Award winning actor whoappeared in 142 movies. His cowboy andother macho roles served as an icon for mygeneration on how a real man is supposed tobehave.

This is a column about fear. Miriam-Webster’s Collegiate Dictionary definesfear as, “an unpleasant often strong emotioncaused by anticipation or awareness of danger.”Fear “implies…loss of courage.” I amfamiliar with the fear that comes from:

Having an oncologist look up from mypathology file and say, “There is no doubtabout it. You have cancer.”

Sitting for hours in radiation waitingrooms as my fellow patients look at eachother and wonde who will live and who willdie.

Experiencing the side effects of radiationslowly burning my spine and resulting inthe odd experience of standing at a joggingtrack ready to run (forcing myself to run)and being unable to do so.

Being unable to walk across a room withoutfalling—I once fell in front of aprospective employer three times during ajob interview.

I cannot go from my bed to the bathroomwithout transferring to a power chair. Iknow about courage and my lack of it,about appropriate and inappropriate angerand the need to put my past behind me andbe human—not a cripple; human. Here inmy apartment in State College, I recognizemy New Year’s resolution must be tobehave (to excuse the sexist expression)like a Man.

Twenty-one years ago I was an arrogantjournalist writing an article for The NewYork Times on the emotional effects of survivingcancer. At the time, society was stillpondering such questions as whether it wasa good idea to tell patients that they hadcancer. Doctors thought it prudent not todisclose likely side-effects. The newspapers,examining the statistics on cancermortality, featured headlines on the failureof the War on Cancer. By doing so, themedia had masked the remarkable progressbeing made especially among children andyoung adults. At a time when my motherrefused superstitiously to say the word cancerout loud, spelling it letter by letter, parentsof cancer survivors had trouble conveyingthe reality that when a child has cancerit need not be a sentence of death.

I was not sufficiently savvy to realize thatthe vagaries of life were mirrored in thefamiliar vagaries of journalism. As I laterlearned, the chief editor of the Times’Magazine made it a practice to reject thefirst draft of every free-lancer. WendyMoonan, my immediate editor, wanted myrevision to include an interview with JohnWayne. Wayne had lung cancer and since1964, despite the objections of his businessmanagers, he served as a spokesman for theAmerican Cancer Society. His commercials, whichfeatured a pitch for early detection,were model John Wayne soundingessentially like someone whowould shoot you without pause if you didnot immediately send a check, which manyviewers did. Wendy warned, “You cannottell him where you got this telephone number.”

I dialed. John Wayne [JOHN WAYNE!]answers the phone and says, “Unless youtell me where you got my phone number, Iam going to hang up on you.” I turned in myeditor without a moment’s thought.

Two weeks after the doctors removedWayne’s lung, he was back at work makinga movie. “I jumped into a river with handcuffson in January…and that was tough. Itkept me from developing a protectionwhich I thought I needed but which I didn’tneed.” I replied that my experiences withcancer left me with unresolved feelings thatwere getting in the way of living my life. Hedismissed the idea that I should, as he put it,feel sorry for myself. John Wayne said,“The thing to do is just try your damndestwithout telling anyone else about it.”

For its own reasons, The Times publishedmy first draft which did not include theWayne interview (making this a Voicesexclusive). Less than a week later, I was onGood Morning America feeling sorry formyself for a brief moment of publicacclaim. Less than a year later, Wayne diedof stomach cancer. Today, I still rememberhis advice with reverence, despite the factthat I detested Wayne’s politics. InFebruary, I plan to discuss:

1. The wisdom of John Wayne

2. How to implement that wisdom here inCentre Country to help reduce fear amongour disabled and aged population.

Blogroll

"The demographics of baby boomer aging over the next decade foreshadow great economic, political and cultural changes that could overwhelm many developed countries," said Richard Behr, founding director of the Center.

"The decrease in the population since the 1940s is attributable to the general economic malaise that descended upon the region when the steelmaking industry moved elsewhere. The major employer WAS the National Tube Works, a manufacturer of steel pipes.

PARF represents the Commonwealth's premier facilities serving individuals with physical, mental, and emotional disabilities. Traditionally, the highlight of the disability community is the annual conference at the Nittany Lion Inn at the Penn State campus